Secondary data sharing: What is it, why is it important, and how is NAACCR involved?

By Castine Clerkin, MS, CTR | June 30, 2025

Secondary data sharing (SDS) occurs when a primary researcher shares data with a secondary researcher to advance science. Sometimes the shared data may contain information obtained from the cancer registry (e.g., through approved linkage requests). The NIH Data Management and Sharing Policy, published in 2003 and updated in 2023, requires that NIH-funded studies participate in…

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Reflections on the 2025 Annual Conference

By Karen Knight | June 23, 2025

Karen Knight, Executive Director of NAACCR, shares her reflections from the conference, with a call to leadership and working together during uncertain times. Having returned home from the 2025 Annual Conference in Hartford, CT, my heart is full of gratitude for this amazing community and my mind is full of new ideas, challenges and opportunities.…

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2025 NAACCR Board of Directors Election Results

By Mona Highsmith, BA | June 16, 2025

The NAACCR Nominating Committee is charged with encouraging volunteers to consider serving on the NAACCR Board of Directors and to accept eligible nominations for Board elections. For 2025, there were four key leadership roles on the Board of Directors to be filled: Treasurer and three Representatives-at-Large. Additionally, this year’s general election selected three individuals for…

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Privacy Preserving Record Linkage (PPRL): Coming Soon to the Virtual Pooled Registry

By Castine Clerkin, MS, CTR | November 10, 2025

The current Virtual Pooled Registry (VPR) workflow requires registries to download an encrypted study data file and perform a clear-text linkage using Personally Identifiable Information (PII). To broaden the scope, and enhance the security of the VPR, NCI has encouraged a transition to Privacy Preserving Record Linkage (PPRL). What is PPRL? PPRL is a technique…

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NCCR Fall Feature

By Fernanda Michels | November 3, 2025

The NCCR Fall Feature highlights key advancements and initiatives within the NCCR community, including highlights on the inaugural Data Jamboree, new study on clinical trial enrollment disparity using NCCR data, recent updates to NCCR*Explorer and SEER*Stat tools, and important upcoming deadline for NCCR registry participants Call for Data. Data Jamboree: Enhancing Childhood Cancer Data Sharing…

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CBTRUS and Cancer Registries: 35 Years of Collaboration

By Carol Kruchko | October 27, 2025

We couldn’t have done it without you! This sums up our relationship with the surveillance community, its stakeholders, and its supporting community. For over 35 years, the Central Brain Tumor Registry of the United States (CBTRUS) has worked with you to quantify the burden of brain and other central nervous system (CNS) tumors on the…

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Fernanda Michels | October 13, 2025

New Study Highlights Enrollment Disparities in Children’s Oncology Group (COG) Trials Using NCCR Data

By Peter Baade | October 6, 2025

CaRDO: A new tool for publishing population-level cancer statistics online.

By Fernanda Michels | September 29, 2025

NAACCR Initiatives Supporting Pediatric and AYA Cancer Research

By Angela Martin | September 22, 2025

NAACCR Education and Training Upcoming Events

By Fernanda Michels | September 15, 2025

Operations at the Brazilian Populational-Based Cancer Registry, São Paulo City: A Conversation with Fernanda Michels

OUR MISSION

Actionable content that unites cancer registries.

The Narrative strives to provide you with information you can use to enhance and strengthen your cancer registry. Look to the Narrative for the latest cancer surveillance news, trends, advances in technology, and latest educational opportunities.

OUR VISION

Make every cancer count.

Cancer affects thousands of people across North America every year. Each cancer case must contribute to our knowledge and understanding so that we may reduce the burden of these diseases. Narrative provides a platform for the cancer surveillance community to collaborate and share data that will improve health outcomes.

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Fernanda Michels | October 13, 2025

New Study Highlights Enrollment Disparities in Children’s Oncology Group (COG) Trials Using NCCR Data

By Fernanda Michels | September 29, 2025

NAACCR Initiatives Supporting Pediatric and AYA Cancer Research

By Fernanda Michels | September 15, 2025

Operations at the Brazilian Populational-Based Cancer Registry, São Paulo City: A Conversation with Fernanda Michels

By Jim Hofferkamp, BA, CTR | September 1, 2025

Helping Vendors Help You

By Recinda Sherman, PhD, MPH, ODS-C | August 11, 2025

Now Available! CiNA Statistics Update

CANCER REGISTRY SPOTLIGHT: MICHIGAN

Successful Linkage Between Registry Database and LexisNexis

In our ongoing commitment to enhance the quality and accessibility of data, we are thrilled to announce the successful linkage between our registry database and LexisNexis. This integration represents a significant step forward in streamlining our data processes and expanding our analytical capabilities.

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Member News

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Nominations Opening Soon for the 2026-2027 Board of Directors

By Lucinda Ham, RHIA, ODS-C | October 20, 2025

The Nominating Committee is seeking nominees to run for election to three key leadership roles on the NAACCR Board of…

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By Jim Hofferkamp, BA, CTR | September 1, 2025

Helping Vendors Help You

By Matthew Mayfield, MS, ODS | August 4, 2025

A Practical Guide for Central Registries Updating to a V25B Metafile

By Angela Martin | July 21, 2025

NAACCR Education and Training Upcoming Events

By Lori Havener, CTR | July 7, 2025

Standardization and Registry Development Steering Committee: Modular Records Task Force

By Mona Highsmith, BA | June 16, 2025

2025 NAACCR Board of Directors Election Results